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One--Five

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Here are my issues (I will try to be as detailed, yet succinct as possible)...any comments are appreciated...

March 2013, Out of nowhere, I started to get twitches all over (but primarily in calves, quads, biceps and triceps). They were mostly constant and lasted for about a month, and just as I was getting concerned and considering going to see my Dr., they went away.

May 2013 - I had knee surgery to repair a torn meniscus. About three weeks after surgery, the twitches came back in full-force.

July 2013 - Twitches now constant and not going away. I also notice I have rather severe pain in my left hip. So I make a Dr. appt. Subsequently, the Dr. orders an MRI and schedules neuro appt.

October 2013 - I see neuro. He examines me for about 20 minutes (standard questions and strength testing, but with no NCV and no EMG). Says he is "largely unconcerned". Orders follow-up in three months and says he will then do EMG and NCV.

November 2013 - Have MRI (comes back clean)

December 2013 - While griping about my hip pain, my gf notices that my left buttock (where the pain is) looks misshapen (i.e. drooping and lacking definition compared to my right buttock). I look at it in a double-mirror. She is right. It is quite noticeably drooping and lacking definition.

January 2014 - See neuro again. Have EMG (I should mention at this point that twitches have not gone away and hip pain is worse). Before starting, the neuro asks me "tell me the muscles where you get the worst twitches," to which I reply "primarily left side calve, quad, buttock, tricep, shoulder, and forearm." He sticks all those places (but only those places). If I recall correctly, he probably stuck me about eight to ten times in total. He also does NCV. After exam he says "Truthfully, I have no answer for why your buttock looks the way it does," he agrees that it looks quite droopy/misshapen, but says he doesn't really think it is atrophy because he says it looks roughly the same size, but just "looks different and lacks definition compared to the right one." I also question him as to whether my left leg looks smaller than my right leg. He measures and agrees that it is smaller, but says he thinks it is negligible (it was 1.5cm smaller at bottom of quad just above the knee). He gives me the results of the NCV and EMG and says "everything is normal, likely BFS." He adds, "I am not too concerned about your asymmetry." He then orders a six month follow-up.

February to April 2014. I feel somewhat better. Twitches subside somewhat (but don't disappear totally), and hip pain is less noticeable - follow up with neuro is scheduled for mid-July

May 2014. - BAM! Out of nowhere, like a thunderbolt, everything comes back WAAYYYY worse. For the last four weeks (and why I decided to post this), I twitch in a way that is even more aggressive and constant than ever before. I literally twitch almost constantly and everywhere (though still primarily left side). I now have twitching in arches of feet and palm of hand (which I didn't prior) . Twitching is so bad I have trouble sleeping. Also, I have developed severe muscle vibrations, serious pain/cramps in my left shoulder, forearm, pectoral, and hand. Left leg feels heavy and weak, and the hip pain is back full-force. I cannot describe the transition in how I feel between May 1st and June 1st. The difference is profound. I cannot stop twitching, pain and cramping is abundant, and my left leg and arm feel heavy and weak. In four weeks I feel PROFOUNDLY worse.

Needless to say, I am extremely concerned. Follow-up with neuro is still scheduled for six weeks from now.

Does anyone have any thoughts?

I am unaware if my posting here is appropriate (as I am totally new to this forum), but I did notice that others have posted their symptoms and gotten feedback/information from some of the other members here.

Anyone with more knowledge/experience of these matters than me, who sees fit to respond with any comments or suggestion, would be greatly appreciated.

If not, good luck to anyone who reads this.

Best.
 

Nikki J

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Your post as you can see was moved to the Do I have ALS section the appropriate place for those who are undiagnosed to ask questions. Please read the stickies at the top of this section. Thank you
 

One--Five

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I should add that my knee surgery was on my RIGHT knee, and that my hip pain and atrophy (or perceived atrophy) is on the LEFT side
 

MaxEidswick

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>Does anyone have any thoughts?

Yes go and see a proper ALS clinic; typically an ALS knowledgeable neurologist will point you to our clinic where they won't do a 2 to 3 day evaluation. No fun till it's done.

Best advice is to stay the FyouCK off the Internet and find professional help.

Kind regards,

Max
 

One--Five

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Thanks for the reply Max...

I don't think there is much I can do at this point except wait for the follow-up with the neuro in six weeks (up here in Canada, we can't just wander into an ALS clinic, we have to go where the doctors tell us)...

I do appreciate the advice though...
Best wishes
 

lgelb

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If your next neuro visit does not bear fruit, I would see an orthopod. Intermittent symptoms can suggest a mechanical cause.
 

affected

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does not sound like ALS because of all the pain and the settling and subsiding, then starting up again.

You need to pursue with new doctors for another opinion. Good luck
 

One--Five

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Thanks you to those of you who have responded thus far...

To Tillie's point, my experience between Feb-April this year actually caused many of my fears to subside, and to think it was likely not serious. But like I said in my original post, the profound way that the problems have resurfaced and worsened in such a short time have now got me extremely worried again. Bad twitching, bad cramping, bad muscle pain (which I assume is a result of the cramping)...ugh!
 

affected

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ALS does not ease off ... then resurface

ALS does not worsen because you are panicking about what is happening

ALS just eats you away

Again, your symptoms don't sound like ALS

Doesn't mean they are not serious, or that something is not wrong. Just means you are worried, I'm responding it's not ALS and the people here are either dealing with the nightmare reality of ALS, caring for that nightmare reality, or like me are reeling with the FACT of having watched their most loved one DIE.

Cramping and pain are NOT symptoms of ALS. (not until you are far progressed and your joints have frozen in place because of the wastage)

All the best
 

One--Five

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Tillie,

Once again, thank you for your reply. I'm terribly sorry to hear what you (and your loved ones) have had to go through.

I'm feeling kind of 50/50 right now. I know that my one normal EMG and my brief respite of symptoms (although, they never fully disappeared) are both positive signs. I also think that given the fact that this whole thing started some 15 months ago now, also bodes well.

Nevertheless, I am not exaggerating when I say that, whatever the cause, I have literally gone from feeling pretty good (and maybe even thinking I was out-of-the-woods) to feeling profoundly worse than any time before (and thus, having been cast back even deeper into the woods).

But in any event, I do appreciate the thoughts and comments of those with more experience in this arena than I have. Your comments in particular are reassuring.

I'm now just counting the days until the next neuro.

Fingers crossed :)
 
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